Palpitations and feeling dismissed...
Hi guys! I'd really appreciate your thoughts...
When (I believe) I was developing MS, I started experiencing heart palpitations. Following my first flare-up, these palpitations increased in frequency and appeared to fluctuate day-to-day, week-to-week (much like my other MS symptoms do). When I mentioned the palpitations to my GP and neurologist, I was immediately dismissed. I'm sure it was unintentional, but they sounded very patronising. I've had a 24-hour ECG, which revealed that I have minor ectopic heartbeats (meaning, I experience extra heartbeats throughout the day). Most of the time I don't feel these extra beats, but when a lot of them happen in a row, I experience a palpitation. The timeline of my palpitations aligns perfectly with when I believe I started to develop MS. Consequently, while I greatly respect the expertise that my GP and neurologist have developed over their careers, I can't help feeling as though they might be wrong here...
Here are the workings behind my logic:
Firstly, there are research papers that link MS and heart problems. There isn't a huge amount of research exploring the link, but honestly, that's not surprising. Many things regarding MS are underresearched!
Secondly, it just makes sense! Our bodies run on electricity, and my wiring has been chewed on by MS rats. I have lesions in the areas of the brain stem that regulate autonomic processes like heart rate. Similarly, we know that MS can interfere with other autonomic processes (including things like bladder control), so why wouldn't it affect the heart too!
I feel as though my GP and neurologist are dismissing me without a second thought. I understand that they've seen many MS patients before me, but isn't MS nicknamed the 'snowflake disease' for a reason? Doesn't MS cause a variety of symptoms that vary massively from person to person?
Have any of you had experiences with palpitations? Maybe your healthcare professionals have different opinions from mine. Please let me know if you have any thoughts or advice, I'd love to hear from you! Lastly, well done for making it through this whopping novel-length message! :)
So. I know you don't consider yourself 'healthy' but in fact, it is very common for healthy young adults to have a sinus arrhythmia i.e. extra ectopic beats. I agree with you, it is perfectly possible for people with MS to have heart issues due to the MS but it's really rare (unlike the sinus arrhythmia) and usually as far as I can see/read, due to extensive lesions in the brainstem or an area called medulla oblongata (your cardiac 'wiring' isn't impacted - it's the control centre in the central nervous system). 1. Are you getting dizzy / short of breath / chest pain with these palpitations? 2. If so, tell your GP this. Because not everything is MS related and you maybe need an ECG/24 hour tape, maybe echo to rule out any congenital (born with it) heart structural defects. If you're getting these symptoms, and there's a reason identified, then meds are a possibility. 3. If you're not getting the above symptoms, ask yourself if it really matters whether its MS-related or not (and its probably not). If it's not hurting you or impacting your life, you're already on a high efficacy treatment for MS. So even if it was MS related, there's really nothing else to be done...
@mellowmedusa First of all, thanks so much for your comment! I think it's easiest for me to respond in bullet-point form... - Absolutely, ectopic heartbeats are very common, and many people live without even realising they have extra or missing beats. Initially, when I found out about the ectopic beats, I just shrugged my shoulders and got on with things! - Following my MS diagnosis, I considered the palpitations to be a completely different kettle of fish. But a couple of things made me wonder if the two were connected: 1) my palpitations increased in frequency and intensity around a flare-up, and started behaving much like my other symptoms do. 2) my MRI report shows I have multiple brainstem lesions, including ones specifically in the medulla oblongata-- an area that includes the cardiovascular-respiratory regulation system. - Haha, forgive my lazy 'rats chewing on wiring' metaphor. As you've pointed out, it's overly simplified! - I wouldn't say I feel dizzy, but I do feel a bit woozy, as though I've just gotten up off a chair too fast. I can experience chest pain, but it is a separate symptom that doesn't tend to appear alongside a palpitation. An echo could be a good shout- thank you for the suggestion! - I don't expect anything to be done about the palpitations because there is nothing to be done, really. I suppose this is a matter of curiosity for me. My GP and neurologist both independently said that MS does not and could not affect the heart in any way. That didn't make sense to me. It left me feeling frustrated and confused. That's why I wanted to come here, to find out if anyone else felt they might have heart-related symptoms. Really, seeing you acknowledge a possible MS/heart link has scratched the part of my brain that was feeling frustrated after my GP and neurologist told me it was absolutely impossible. So thank you for that!